Liam got to visit Dr. Peters today. (CJ did, too, but there isn't really any news there. Honestly, no news is many times good news, right?) We discussed his hearing test from Monday that left us a little baffled about the results.
Monday's bone conduction test showed that Liam might only have a mild/moderate hearing loss rather than a severe/profound loss. We weren't sure what to make of that then, but I feel better about it all now. Dr. Peters reminded me that children with Mondini issues (damage to the formation of the cochlea) may sometimes have hearing that ebbs and flows. In his opinion, it's not a question of if Liam will need a cochlear implant, but when. He is far more inclined to believe the three ABR's Liam has already had.
To be honest, I feel MUCH better about this than I thought I would. I think my heart already knew that Liam is Deaf, and my heart loves that. I love that he is precisely who a loving Father in Heaven meant for him to be. Rather than mourn Liam's and CJ's hearing loss, we'd already reframed so much of it in our minds and learned to embrace and build upon it.
So, we are waiting two weeks to see if his ear infection in his left ear will clear up and then we'll see Dr. Peters again. At that point, we can discuss where we go from here. So, I don't really have any big news. Like I said before though, sometimes no news is good news.
Wednesday, March 3, 2010
Tuesday, March 2, 2010
Practically Perfect Pulmonology Appointment Today
Liam saw the amazing Dr. Rivera-Sanchez today for his scheduled appointment. You have to understand that we LOVE this doctor for him, and really respect her opinion. I give her a hard time, I think, because I am comfortable taking care of him at home when she would sometimes prefer me to let him be admitted for a night to be sure he's doing okay. As much trouble as I give her, I do love what she does for Liam and Drezden. I love that she listens and really seems interested our needs as a family. As much as we love her, we wouldn't mind it if our sweet boys got to a point where they got to see her for things like Christmas get-togethers or in passing at the grocery store.
Today, we got one step closer to that wish. She was SO IMPRESSED with Liam's progress. His retractions are minimal. His room air sats are normal!!! His cough is almost non-existent. His stamina has increased. By all counts, he appears to be a typical 14 month old baby. We still have a few small things we need to work on, but it's all managable. We are so delighted with his progress as is she. (Now we just need to get her happy with Drezden's progress..and we WILL make that happen).
Byron was asking me last week why it is that we have so many of these challenges in our lives. I think it's because the Lord is blessing us with the opportunity to show Him we can and will endure to the end making our best effort and with high hopes and hopefully minimal complaining. Now, we are being blessed with miracles for our efforts. Liam is pretty ahead of the game for NEHI children. Most of them are around 2 years old before they start considering weening from the oxygen. Did I mention that he's 14 months old and only occasionally uses daytime oxygen?
Yeah. It was a practically perfect pulmonology appointment today.
Today, we got one step closer to that wish. She was SO IMPRESSED with Liam's progress. His retractions are minimal. His room air sats are normal!!! His cough is almost non-existent. His stamina has increased. By all counts, he appears to be a typical 14 month old baby. We still have a few small things we need to work on, but it's all managable. We are so delighted with his progress as is she. (Now we just need to get her happy with Drezden's progress..and we WILL make that happen).
Byron was asking me last week why it is that we have so many of these challenges in our lives. I think it's because the Lord is blessing us with the opportunity to show Him we can and will endure to the end making our best effort and with high hopes and hopefully minimal complaining. Now, we are being blessed with miracles for our efforts. Liam is pretty ahead of the game for NEHI children. Most of them are around 2 years old before they start considering weening from the oxygen. Did I mention that he's 14 months old and only occasionally uses daytime oxygen?
Yeah. It was a practically perfect pulmonology appointment today.
Monday, March 1, 2010
Baffling, Yet Hopeful (We Think), Hearing Test
Liam had his first soundbooth hearing test today. Trying to do the ABR test, which requires sedation, is really challenging because of his NEHI problems. The goal is to condition him to be responsive in a soundfield situation and bypass the need for sedated ABR testing.
Linda Daniel met us there to work in the booth with him on his testing. Without any hesitation, we got started on his test. As the testing went on, it was very obvious that Liam wasn't hearing much of anything at all. I knew that going in, and it really didn't get me down. Then we moved to the part of the test where we start all over, but with him wearing his hearing aids. With the kind of aids he has, we would expect to see immediate results.
Even with the hearing aids in, we were only seeing about a 60-80db threshold. Not a good thing. On a hunch, Linda suggested that we do the bone hearing test. (I know that's not the correct term for it, but my brain is friend and I can't remember the right word.) They put what looked like a headphone without the foam coverings on him behind the ears.
The idea was that this would put the sound directly into his cochlea, and effectively avoid his entire middle ear. The results? Only a 20-40db hearing loss!!! That's only mild to moderate losses!!!! It would still require him to wear hearing aids, but speech would be much easier for him later.
The truth is that we don't really know what all this means. There are a lot of possible reasons why he was so responsive that don't have a ton to do with his actual hearing, but it's a big question mark right now. We will see Dr. Peters on Wednesday afternoon to determine what we need to do next. It may very well be the bone ABR. (Again, not the right term. I will find the correct vocabulary and come back to replace it later.)
So, that's the the latest news. It's not really real news right now, I guess. But, it is a change in what we thought as recently as this morning, so it's worth reporting.
Linda Daniel met us there to work in the booth with him on his testing. Without any hesitation, we got started on his test. As the testing went on, it was very obvious that Liam wasn't hearing much of anything at all. I knew that going in, and it really didn't get me down. Then we moved to the part of the test where we start all over, but with him wearing his hearing aids. With the kind of aids he has, we would expect to see immediate results.
Even with the hearing aids in, we were only seeing about a 60-80db threshold. Not a good thing. On a hunch, Linda suggested that we do the bone hearing test. (I know that's not the correct term for it, but my brain is friend and I can't remember the right word.) They put what looked like a headphone without the foam coverings on him behind the ears.
The idea was that this would put the sound directly into his cochlea, and effectively avoid his entire middle ear. The results? Only a 20-40db hearing loss!!! That's only mild to moderate losses!!!! It would still require him to wear hearing aids, but speech would be much easier for him later.
The truth is that we don't really know what all this means. There are a lot of possible reasons why he was so responsive that don't have a ton to do with his actual hearing, but it's a big question mark right now. We will see Dr. Peters on Wednesday afternoon to determine what we need to do next. It may very well be the bone ABR. (Again, not the right term. I will find the correct vocabulary and come back to replace it later.)
So, that's the the latest news. It's not really real news right now, I guess. But, it is a change in what we thought as recently as this morning, so it's worth reporting.
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